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Thursday, January 19, 2012

Michael Aaron Update 4

Michael Aaron - 6 days old. 
Michael ate like a champion today.  He was required 35 milliliters per feeding and decided he'd consume 40 to show the hospital staff how it's done.  

Sarah continues to Blaze the Light of Jesus in Michael's little NICU room.  There is no doubt in my mind that God is using Michael's birth and his mother's journey in his first week of life to call more than one person to Himself.  Tears are shed and questions raised that lead to answers about our Sovereign God.  

Since Daniel and Nicky have been only slightly on the stuffy nose and coughing side of health, we've kept our distance from Michael the past few days and I've tried to spend as much time with the boys as possible.  We had another 'sleep over' in daddy's bed last night, and spent the majority of our snowy day in the basement with a fire going, playing Battleship, Wii and freeze tag in our pajamas.  I think it was therapeutic for the boys, I know it was for me.  

The past few nights, once the boys are bathed, in their PJs and in bed, we call Mommy, put her on speakerphone and say goodnight.  She prays over the boys, tonight each of the boys sang a song to her while I strummed, it's a sweet time.  One more thing that gives those boys a sense of security.  But I look forward to those moments not being over the phone.  I pray it's sooner rather than later.  I'm ready for my family to be together.  ...but that's just me being selfish. ;)

This just in: last feeding of the day: Michael consumed 45 mls!  Sarah said "This is a different kid from two days ago.  He's turned into a piggy!"  I thank you for your prayers that turned my boy into a piggy. 

26 comments:

Sarah said...

Wow... I'm crying again, but everything is making me cry tonight! God has such BIG plans for Michael and your family, and they are already starting to show up.

And great job eating Michael! :) Go big boy, go!

Praying for you all!!! ♥

supergirlrt25 said...

YAY!!! GLORY BE TO THE MOST HIGH GOD!!! I will keep you and you family in prayer! May God continue to watch over and be with Michael!

sandyv said...

I'm so happy to hear that Michael is doing so well! You and your family will stay in my family's prayers.

Emma McGarity said...

Thanks for giving us a glimpse into your life. God is surely using Michael to reach others for Christ!

RK said...

Great news about the feeding!!! AV canal can sure do a job on the energy a little one has to exert for feeding, so he's a superstar! Hope it continues, for sure. God is doing amazing things, and I appreciate that you're sharing some of that with us. Encouragement can come from the most unexpected places sometimes.

mamamia said...

yay for piggy baby! woohoo! he is rockin and rollin and already amazing everyone. I look forward to your posts and continue to pray for my family in Christ. you are TRULY BLESSED!

Deedee said...

Aaron and Sarah! that is wonderful answer to prayer! We continue to pray as a family for you that God would give you just what you need for that day...be it a neighbor shoveling your snow or play time with the boys or Michael eating well! God is faithful. Love you!

Ronda said...

I have friends that had a baby with downs and had to have multiple heart surgeries, and he's doing great; they know what you are going through!

Bron said...

YAY GOD!!! THANK YOU JESUS!!! HOLY SPIRIT, THANK YOU FOR YOUR COMFORTING PRESENCE IN THIS FAMILY!!

Continuing in prayer, and will continue to share the wonderful progress reports with my FB friends so they can pray and rejoice along with me!

SO happy Michael's eating a lot more!
And it's not selfish to want your whole family to be together once more, ... it's love! :)

Denise said...

Hi Aaron, I am Denise. I am a nurse that has taken care of Michael on the night shift. We met briefly the other night when I was able to get Michael out of bed for Daniel to hold him.
I have spent some time talking to Sarah. What an inspiration Sarah is. She is such a beautiful person, soul. Michael is such a sweet baby.
He is definitely making great strides in the hospital. You all will be home before you know it and the chaos will be beautiful!!
Look forward to reading your blogs. Your music is wonderful!

God's Blessings!!

Rai and Shannon said...

So happy that Micheal is continuing to do well!! And what a blessing to have this special time with Nicky & Daniel, even though it isn't the way you wanted it to be. Praying Micheal @ Sarah will be home soon...exactly where they belong! Thank you again for the updates!!

Jennifer said...

He's such a cute piggy! Thanks for letting us know how things are going. It's so great to see God use you to show others Himself.

Claudia said...

I remember when I found I my child was special and could hear the Lord saying "My dear child, this baby is perfect because I have created her". May the Lord continue to bless your family and little Michael to draw many closer to Him.

Dr. Greg's Blog said...

Aaron, your story is bringing me back. I remember the early days of DS questions, difficult feedings, jaundice, heart defect and a million more about my little girl's future. In hindsight, love and surrender is what got me through it and still does. God IS with you, take heart, be strong, He's got a plan for Michael, you and your family. You are already stepping into it. Thank you for putting your heart 'out there'. You are changing the world.

Becky said...

I know I am a small voice among many but felt called to leave another comment as you are just beginning this journey with Down syndrome. Your wife sounds amazing, so strong in her faith. When my daughter was born with DS, I was not so strong. After leaving the maternity ward after just being told my daughter might have DS, I had to go somewhere to get a lab drawn. I was by myself and calling out to the Lord. In that painfully emotionally moment, He spoke to me. He told me to trust Him and it would be okay. I did. Four years later, it is so okay and my walk with Him on this journey has been amazing. That little boy you have is already showing you this at four days old...it just gets better and better, especially, as you already know, when you trust in our Lord. Oh, it is not selfish to want your family together. I am praying.

Summit of Glory said...

Great news about Michael. He's gonna surprise you in many ways!! Oh and by the way - this whole journey GETS BETTER EVERY DAY!!! Really and truly. Happy weekend. xoxo

TonyaG said...

Aaron.... I love that you are such a positive Christian influence. You and your wife are an amazing team and I'm sure I'm not the only one to think this. I'm praying for all of you. I will say this..... I work at the Disney Channel Rocks show at Hollywood Studios and I see LOTS of Downs children. They are my favorite guests...because they enjoy the music and singing like no one else. So your Little Michael is sure to be a great addition to the Future Shusts Band! Blessings from Florida! Tonya. ... formerly from Minneola

Fluffy (aka odditblue) said...

Prayers. Tears. Smiles. Constant amazement. Huge Love to y'all. Thank you for sharing so freely with all of us. More prayers for all of you. Every day.

mitzi said...

Praise God! So precious! We've been praying for God to "re-form" Michael's heart and He's "re-forming" other hearts along the way! :)

T said...

So happy to hear Michael is doing so well! Hope you get to bring him home very soon! Sounds like you are making the absolute most of this special time with your other two boys though and that is something none of you will ever forget! Sweet family time! Love how Sarah is being Supermom and also showing Gods love to everyone around her <3

TobyBo said...

I am praying for you all here. I am an adoptive mom to some special needs kids and just want to say that God uses them to reflect parts of His image that you don't get to see in most people. Parts of this journey are a very beautiful thing. :)

Beth said...

What a beautiful post. I am so thrilled that Michael is eating more and doing so well! In my little ol' humble opinion, I don't think it's selfish for you to want your family together...I can't wait for that for all of you! Keeping you all in prayer, Aaron. Sending love to you and your family.

kim said...

PTL! Your story is so similar to ours almost 15 years ago: DS and AV Canal. It has been a wonderful journey and continues to be so. Our son, Justin, is the sweetest child. The Lord knew He was placing him in the right family even though we weren't so sure. The best advice I received at the hospital was this: you have a beautiful baby - take him home and love him. No different than any other child of yours would be treated. God IS Good!

BrittanyChristy said...

What an absolute blessing! I have son, 19 months old with Down syndrome and I can tell you from experience that you will be opened to a new world of complete love and acceptance. I have learned through my son that God makes mistakes and although I never asked for my son to have Down syndrome it was exactly what I need to make my world right with the Lord. You are very blessed and will be amazing by God's little surprises with your son. Please also know there is a world of family supports in the area. The Upside of Downs is a wonderful organization for information, support and advocacy in which my husband is the Vice president of the board. We are praying for your family and your precious gift from God.

Rick Church said...

Oh, that men would give thanks to the Lord for His goodness, and for His wonderful works to the children of men! Psalm 107:8

Unknown said...

Awesome feeding update! As I read your latest post I started to cry. One out of joy for you and two out of rememberance of my son not eating. We spent 35 days in the NICU trying to get him to eat. Finally going home with a ng tube and at 16 mo getting a g-tube. He now eats and eats like a piggy. God is so good at answering our prayers! I told my twelve year old daughter that you and your wife just had a son and he had down syndrome...her response was "cool"with a big smile. Some day you will too see and say "cool". If there was a magic pill to take a way down syndrome from Noah, I would not give it to him. It would change everything that I love about him. Please post pictures of Sarah with Noah. Congratulations! -Kris R.